At Rare Diseases South Africa we place great value and emphasis on creating awareness, educating and sharing best practices amongst our network, our patients and society at large. We host a number of events throughout the year – some physical, some virtual and some hybrid – with the intention of ensuring that those we touch leave the session empowered with greater knowledge, empathy and understanding of rare diseases and congenital birth defects.


We also host regular community events and support our patient events as our priority is to ensure that no one affected by rare diseases has to walk this journey alone. Although individually rare, if we stand united, collectively we are powerful.

patient events

If you’d like to register for or participate in patient specific events hosted by family, friends and/or support groups, click here.

Rare Diseases SA frequently hosts events in support of various conditions and or rare disease related causes. Keep up to date or follow us on Facebook for regular event updates. 

community events


Awareness days serve to draw attention to and create awareness of illnesses and conditions. With more than 7000 known rare diseases there are a significant number of awareness days throughout the year.  Click here to find out more.



We regularly partner with various organisations, brands and specialists who are able to provide insightful content and informative feedback on relevant issues, conditions, treatment and regulation changes which may be of interest.


Register for an upcoming webinar or follow our Facebook page for updates and webinar details.


Rare Diseases SA not only hosts conferences (including RareX) but regularly participates in, facilitates and partners in a number of relevant conferences and exhibitions around the world. Stay up to date on upcoming conferences here.